If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Please, let us not forget...

Collapse

About the Author

Collapse

Eileen2345 Find out more about Eileen2345
This topic is closed.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #46
    Re: Please, let us not forget...

    I know I said Goodbye, but I want to say one last thing. It's something that's bothering me more than anything posted in this thread.


    Throughout my posts, my main word is - fear. When I say things like "The fact is, you don't know what will happen in the future" or it's not "normal" -- that's not good. It's not a good way to live.

    I'm a Christian, over the past 2 years, and I've read all of the New Testament, studied the 4 Gospels and read much of the Old Testament. I, of all people should know that God is in control of my life.
    Jesus healed many, many people while He was here on earth. He can heal me. And, Jesus has helped me very much up to this point, and more healing will happen by Him.

    I have a close relationship with Jesus, but you wouldn't know it by the way I spoke in this thread.
    My lack of faith was all over this thread. For that, I'm NOT proud. I'm ashamed.

    I believe every word written in the Bible, and the Bible says that God is faithful, and He keeps His promises. I need to stay more in prayer- that's where I belong, not debating something like this with my fellow HCMers.

    I learned a lot about myself from this thread, and I know that I need to work on my unbelief and lack of faith, and trust more in God.
    I'm not saying this to debate anything about God - in fact, this is my last post here on the HCMA, for a long time - and not because I'm angry...
    But because, my New Year's resolution is to study the book of Isaiah, and read the rest of the Old Testament. (Just for fun and knowledge, and to build a closer relationship with God.)

    Thank you again everyone, take care and God bless all of you.
    49 yrs. old
    Diagnosed at 31.
    Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
    First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
    Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
    Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
    My brother passed away suddenly at 34 yrs old from HCM.
    2 teenage children, ages 17 and 15.

    Comment


    • #47
      Re: Please, let us not forget...

      Eileen, God bless you too! Love conquers all. You are certainly in our hearts. I find that it helps me if I take life one day at a time.

      John
      Diagnosed HCM 1998
      Myectomy June 2010
      50 mg Toprol XL

      Comment


      • #48
        Re: Please, let us not forget...

        Yes we do have formal consensus and guideline documents all which support the views of this board.
        I agree that many have issues with their families not understanding how HCM can impact people in such a varied manner... in fact this was considered in the 3rd edition of my book.. out later this year.
        It is lovely that some people have faith and belief in the spiritual I am luck to work with people who have very varied beliefs and have learned that ALL beliefs have amazing power.. but i have also witnessed...God helps those who help themselves... use the tools He gave you to live the life He wants for you... Doctors, support, family... and yes this message board... all are tools for you to use in the fight.. be it an easy fight or a hard one.

        Eve... i know you will be back... we have known you too long... you have our love and support.. and the phone line is always open.

        Lisa
        Knowledge is power ... Stay informed!
        YOU can make a difference - all you have to do is try!

        Dx age 12 current age 46 and counting!
        lost: 5 family members to HCM (SCD, Stroke, CHF)
        Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
        Therapy - ICD (implanted 97, 01, 04 and 11, medication
        Currently not obstructed
        Complications - unnecessary pacemaker and stroke (unrelated to each other)

        Comment


        • #49
          Re: Please, let us not forget...

          Originally posted by Lisa Salberg View Post
          It is lovely that some people have faith and belief in the spiritual I am luck to work with people who have very varied beliefs and have learned that ALL beliefs have amazing power.. but i have also witnessed...God helps those who help themselves... use the tools He gave you to live the life He wants for you... Doctors, support, family... and yes this message board... all are tools for you to use in the fight.. be it an easy fight or a hard one.
          This reminds me of the parable of the drowning man.
          "Some days you're the dog... some days you're the hydrant."

          Comment


          • #50
            Re: Please, let us not forget...

            Originally posted by jenken View Post
            I have been a SSA disability adjudicator for 16 years...
            I found your post to be extremely helpful and well-written... thank you! Please consider posting this information in a seperate thread if it doesn't present a conflict of interest with your job. I myself was denied SSDI because of specific wording that my doctor used in his notes. I had a myectomy in 2004 which successfully eliminated my obstruction but unfortunately my doctor used the word 'cured' in his notes. Although myectomy does often 'cure' the obstruction, it speaks nothing to the underlying disease that caused it or the fact that I was still in heart failure, had an ejection fraction of 30%, and was virtually bed-ridden for three years. I'm doing much better now and I'm thankful for that, but because of the specific wording that my doctor used I was denied the financial assistance that I desperately needed and if I might add... have paid into my entire life.
            "Some days you're the dog... some days you're the hydrant."

            Comment


            • #51
              Re: Please, let us not forget...

              Eileen:

              Here's to a Happy/Healthy New Year to you and to all us HCMers. May we all get the care and support we need based upon our individual needs in the upcoming year. And a thank you from Moosedreams to you-all for being here - I consider everyone on this site a part of my community of my family.

              Toodle pip... Moosedreams
              Diagnosed HCM Nov 2009
              100 mg Atenolol; Baby asprin
              First Trip to CCF June 2010
              HCM Specialist at CCF... Dr. Harry Lever
              Septal Myectomy at CCF... August 9th 2010: Dr. Nicholas Smidera
              AICD w/pacer at CCF... December 20th 2010

              Once you choose hope, anything's possible. ~ Christopher Reeve

              Since we can not run in the park, we can be the ones to take a stroll, look around and enjoy the simple things in life. ~ Rosemaire1125

              www.TheRhubarbChronicles.com

              Comment


              • #52
                Re: Please, let us not forget...

                I have been reading this thread and I am glad I have held back with my reply. This thread has made me laugh, cry, angry, so many emotions all at once. I have been a member here for just over a year and after being dx'ed I needed to find out as much as I could about HCM. THANKFULLY the HCMA was one of the first places I found. I just wanted to let Lisa, the HCMA, and every one of the moderators here know that at no time have I ever felt missled or decieved or any other word that may be used to describe what has been said here. I personally want to thank every of you for your positive outlook and very honest answers to all the questions I and many others have posted. I have never felt more NORMAL in my life. I felt as if the whole world was ending when I was dx'ed until I found this site. All my local Dr's know is a bunch of %ages and I felt lost. I found this site and now know there are thousands of other people just like me......Lost and learning every day as we go......Im sure HCM is like every other disease out there and we will NEVER know all there is to know about it. After all doctors are not God and are just practicing medicane. There is such a broad spectrum that go'es with any disease and there is a normal range that go'es with all of them. Even the flu is different in every person. So to say this site is misleading I feel is wrong to say.....You just cant read one post to form an opinion.......After all Knowledge is power. So I think I will stop now and just say.....



                THANK YOU TO ALL OF YOU THAT MAKE THIS BOARD POSSIBLE AND WHAT IT IS........I know that I am NORMAL in the way that I feel, the questions I have, The feelings I have for the people here, because there are so many others that feel the same way!!!!!!
                Tim
                Diagnosed HCM @ 44 Nov.2010
                Daughter diagnosed HOCM Dec. 2010
                ICD Implanted 1-24-11
                Knowledge Saves Lives

                Comment


                • #53
                  Re: Please, let us not forget...

                  I believe I like Tufts description much better it concedes that this is a varied disease without being pessimistic.
                  "Hypertrophic cardiomyopathy (HCM) is an abnormal enlargement of heart muscle (cardiac hypertrophy) and is the most common genetic cardiovascular disease. Its prevalence in the general population is estimated to be approximately 1:500. Because HCM is a genetic disease, the clinical manifestations are varied and range from asymptomatic to congestive heart failure symptoms, stroke and even sudden cardiac death."

                  While I knew pretty much that I was unusual in my symptoms and progression. In the beginning it was nice to get some sort of support. I don't tend to visit as often because I see very little information being added for those of us who are unobstructed but are still disabled. It almost seems that since we are in the minority that "the greater good is more important to look at" and we are left on the side of the road to fend for ourselves. It seems as if the only answers I can seem to get is to fly up to Boston and speak with Dr. Maron one on one.
                  My biggest fear is the same as Eileen 10 years of fighting to get my progression taken seriously down here. That is also with 10 years of Dr. Maron begging to talk to my doctors to convince them of my plight. I'm getting more stable these days but am no where near "normal". One of my psychology professors has an interesting quote that I think is pretty appropriate here " There is no normal true world. The world is how we (as individuals) perceive it" A normal good day to one might be running a couple of miles before work. For me just getting out of bed and making it up two fights of stairs to my class without being half dead is a normal good day. Two very different perceptions!
                  Peace all,
                  Mary

                  mary

                  Comment

                  Working...
                  X